Click here for the survey: Anonymous Survey
You are being asked to volunteer in a research study titled Preimplantation Genetic Testing Decision-Making. This is a voluntary research study for people (women and men) who are considering or have recently considered preimplantation genetic testing (PGT). The purpose of this study is to investigate considerations, concerns, and factors underlying the decision-making process about whether to use PGT testing. If you agree to participate in this anonymous survey, your part will be to answer some questions. It should take about 25-30 minutes of your time.
We believe there are no known risks associated with this research study; however, as with any online related activity the risk of a breach of confidentiality is always possible. To the best of our ability your answers in this study will remain confidential. We will minimize any risks by storing responses in a password protected drive and by not asking any questions that would identify who you are.
This survey is anonymous, and the information from this survey cannot be traced back to you. To ensure that this research activity is being conducted properly, Stony Brook University's Committee on Research Involving Human Subjects and/or applicable officials of SBU, OHRP (Office for Human Research Protections), have the right to review study records, but confidentiality will be maintained as allowed by law.
There are no costs to you for participating in this study. You will not be paid for your participation. Your participation is completely voluntary. You do not have to participate if you don’t want to.
If you have any questions, concerns, or complaints about the study, you may contact me at email@example.com or through the website.
If you have any questions about your rights as a research subject, or if you would like to obtain information or offer input, you may contact Ms. Lu-Ann Kozlowski, BSN, RN, Committee on Research Involving Human Subjects, 631-632-9036. If you participate in this survey, it means that you have read (or have had read to you) the information contained in this letter, and would like to be a volunteer in this research study.
Lisa Pastore, PhD
Department of OB/GYN and Reproductive Medicine
Stony Brook University Hospital
2017 ELSI Congress, scientific poster #1
2017 ELSI Congress, scientific poster #2
2016 North American Society for Psychosocial Obstetrics & Gynecology Biennial Meeting, scientific poster
Genoff Garzon MC, Rubin LR, Lobel M, Stelling J, Pastore LM. Review of Patient Decision-Making Factors and Attitudes Regarding Preimplantation Genetic Diagnosis. Clinical Genetics. 2017 (DOI: 10.1111/cge.13174)
Systematic Review of Patient Decision-Making Factors and Attitudes Regarding Preimplantation Genetic Testing.
Preimplantation Genetic Testing Patient Decision-Making: New Tools to Assess Decisional Distress and Decisional Uncertainty.
Review of Research on the Patient Decision-Making Process for Preimplantation Genetic Testing.